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  • #16
    Re: a question about bladder instillation

    I know, there is hope. It is just hard to be hopeful lately cause I'm in pain all the time again. It almost seems like diet has no affect. I'm always in pain it seems like. I don't know just tired of this. I will let everyone know what the doctor says on Monday. When I made my instillation today they had me pee first so they can test for infection. Then about 30 minutes later they catheterized me and drained my pee and instilled the heparin/lidocaine. They got 450 ml of pee out of me when the catheterized me. I have an emptying problem too. I don't know if they can solve that. Maybe they can resection my bladder and get rid of the bottom portion? I don't know. I'm just dreaming. I"m seriously getting ready to ask for bladder to be removed or any surgery they will do.

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    • #17
      Re: a question about bladder instillation

      It is normal to retain some urine in your bladder after urinating. Just so you know, they do the same procedure at my uros office too. They have me give a urine specimen to test and then I am waiting 20 minutes for them to come back with the bladder solution! They use a pediatric size catheter on me so I have learned to go to the bathroom again right before they administer the cocktail. You would be amazed how much urine I have to pee out 20 minutes later! I suggest next time go to the bathroom again before they give you the cocktail. That way they don’t have to drain the urine first before putting in the cocktail. The lessser the amount of time the catheter is in, the better! Also, I ask my uro for a script of doxy for preventative uti’s. I take one immediaty after each installation. I hope you are getting some relief from the cocktail!

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      • #18
        Re: a question about bladder instillation

        they don't like me to pee again before they put the catheter in me. They say they like to have some urine so they know they are in the right place. I don't know, it doesn't sound like the best answer to me.

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        • #19
          Re: a question about bladder instillation

          Hmmmm, I can almost guarantee you would still have at least some urine left in there! I am just wondering if it causes you more pain because you have to wait fo4 your urine to drain first???

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          • #20
            Re: a question about bladder instillation

            When I was having instillations, they inserted the catheter, drained the urine, then instilled the solution.

            Donna
            Stay safe

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
            [3MG]

            Anyone who says something is foolproof hasn't met a determined fool

            Comment


            • #21
              Re: a question about bladder instillation

              I had my uro-dynamics and cysto-scope done today. Uro dynamics is nutty painful. First they had me pee into a special funnell to gauge the force of the stream. They also measure the amount of urine. I had nearly 800 cc's of urine. They they put a catheter up to drain the rest. There was a good amount (like close to 12 ounces.). This was very painful cause when they put the catheter up me, she lubed the catheter but didn't inject lube into my penis. Then the shoved a sensor up my rectum, put some sensors near my groin area and put another larger special catheter up me. This catheter hurt even more. Again they lubed the catheter but didn't inject the lube up my penis. I nearly passed out. They had to take a break and put a wet wash cloth on my face. Then they filled my bladder with water and asked me when would I push pause on the movie to actually go pee. When I told them they then had me try to pee with the catheter in me. This hurt alot too. I mean alot. They do this to test the bladder muscle and see how strong it is.

              An hour later the doctor did the cysto-scope. That was easy in comparison because he injected plenty of lube first before putting the camera up me. He noticed not urethral strictures, or prostate strictures, and said the bladder neck seemed ok. He said the inside of my bladder looked fine. He said my pelvic floor muscles were extremely tight. He said the pelvic floor is why I"m not emptying good. He things my bladder is fine. I explained though then why am I getting relief from instillations. He didn't have an explanation and recommended to continue to get them as needed. He also isn't a fan of elmiron but I still want to take that so he said fine. He recommended I do more physical therapy which I will continue. So I gotta keep fighting this terrible illness. I think i'm making progress though.

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              • #22
                Re: a question about bladder instillation

                I’m sorry it was so tough today, especially those tests for a guy! My guess is maybe they didn’t use the lidocaine inside in case it compromised the test? Sorry it was so painful! Frustrating when they can’t actually find anyth8ng “wrong” with you! How lon* have you been on the Elmiron? It can take as little as 3 months up to 8 months or longer sometimes to feel the eff3cts if it is working for you. Definitely continue with the pt. Do you use Valium suppositories at night? I think those might really help in conjunction with the pt.

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                • #23
                  Re: a question about bladder instillation

                  I'm glad you got through uro dynamics testing --- I'm sorry it was horrible for you. I hope you're doing better today.

                  It's not unusual for an IC bladder to appear to be normal and healthy when the cystoscopy is done in the office without anesthesia --- mine did. When I had a hydrodistention, the IC showed it's ugly self, complete with tiny Hunner's ulcers.

                  Have you looked at the sub-types of IC (see link in my signature below). I think it's good that you will be continuing with physical therapy.

                  Warm hugs,
                  Donna
                  Stay safe

                  Have you checked the ICN Shop?
                  Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                  Patient Help: http://www.ic-network.com/patientlinks.html

                  Sub-types https://www.ic-network.com/five-pote...markably-well/

                  Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                  AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                  I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                  [3MG]

                  Anyone who says something is foolproof hasn't met a determined fool

                  Comment


                  • #24
                    Re: a question about bladder instillation

                    That is what the doctor told me that injecting the lidocaine would compromise the test. Yes I'm doing a lot better today. I've been on elmiron for about 5 and 1/2 months now. I do feel like I'm making some progress. I went 4 weeks between instillations farely recently. I had a 2 week period where I was feeling really good. I"m not saying I didn't have pain free days, but days where I had long periods of either low or no pain. And when the pain did come on it wasn't as bad as before and it was short lived. I"m definitely going to continue the elmiron and my stretches. I had another Dr.'s appt today and we are going to do an interstim trial in early May. I have a problem still where I"m not emptying good. I peed today, and they scanned my bladder about 20 minutes later and I had like 380 cc's of urine. The doctor today said that sometimes the interstim helps with that and maybe that would help my pain. They think I"m not draining good because of pelvic floor dysfunction. They said my bladder is pushing out plenty strong.

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